Friday, January 30, 2009

Almost a Year Later



Tomorrow marks the one year anniversary of the day I called our pediatrician yelling at the poor receptionist. I told her loudly,firmly, with tears, that Kevin could not wait two more weeks for an MRI. I was in the car on my way to meet my boss (to prepare to return to work from my maternity leave). Kevin's 'headaches' were eating me alive. The pain was unbearable, having to watch my son suffer was too great. I knew something was terribly wrong with Kevin, I just didn't know what. I called my friend Carole in tears and asked her to go to the ER at Children's Hospital with me. I needed someone strong there with me as I demanded for my son to get an emergency MRI. The week before they had sent us home telling Eric, his dad, and I it was migraines, 'give him some Tylenol'. Carole had lost her husband to a brain tumor and she was the voice that kept reassuring me, over the days leading to this,that something was wrong with Kevin. I wasn't crazy.

Kevin never had the sudden headaches when he was with Eric or his mom. I really thought I was doing something wrong or seeing things. That is, until we had friends over for movie night and Carole saw Kevin have one of his headaches. It took me a couple of days, but finally, I said enough was enough. I pulled Kevin out of school. I called my friend Allison and asked if she could take Scotty home from preschool and keep him until Mike got home from work. Within an half an hour, I picked Carole up and headed to Detroit with 3-month-old baby Jake in tow. After 4 hours in the ER, Carole and I convinced the ER doctor to get a neurologist team to come down and evaluate Kevin. They saw one of Kevin's sudden headaches first hand. I think they knew right away, but didn't say. They just ordered an immediate MRI. Unfortunately, we had been letting Kevin eat while in the ER room, so they had to admit him and do the MRI the next day. The residents as they were admitting Kevin were back to saying, "oh, its probably nothing". I felt like I was wasting every one's time, but my son was more important than my sanity status. The next morning they found a golf ball sized tumor at the back of his brain. I will never forgot the doctor who had to tell us, "your son has a tumor, we have to do emergency surgery because the pressure in his brain is dangerously high".

We didn't leave that hospital for almost 3 weeks. But Kevin did leave Children's Hospital walking, talking and with little obvious consequence of the brain surgery. The 5th floor nursing staff along with Dr. Sood's work were amazing. They were all very kind to us, incredibly understanding, and amazing with Kevin, who can be like an old grumpy man in his little boy body at the worst of times, but who can blame him? Kevin had to be poked at all day and night long. After his surgery, Kevin had a lot trouble walking and huge balance problems at first. But once he learned there was a library on the same floor as his room he moved from a wheelchair to walking with some assistance within a week (his head still had a tube coming out of his brain that drained into a bag on an IV pole he had to take everywhere with him). Kevin's determination to be normal and not let this hold him back is amazing.

I have to stop here because I have this powerful memory of Kevin, in a hospital gown, with blood still stuck in his hair from the surgery, and just barely enough balance to sit in a chair. It was dark outside, so probably evening, and our family was gathered around Kevin. We were surrounded by a ton of little stuffed animals and gifts family, friends and strangers had sent. Someone had just brought in the cards his 2nd grade class had made for him. There my son sat, in a chair maybe for the first time since his surgery, reading the cards his classmates made for him. I will never forget the smile I saw as he read the cards. One of the little girls even signed her name with 'Love, so-and-so'. I saw Kevin's spirits rise in that moment. Those little handmade cards meant the world to him. They gave him power I couldn't, the doctor's couldn't, his dad couldn't. Only his classmates could and did.

Within days of Kevin coming home from the hospital I was racing around collecting Kevin's medical information and tumor samples. By the grace of God the right moms stepped in and helped us get Kevin into St. Jude. (Not as easy as you would think to get into if you don't have the support of your local oncologist.) But St. Jude offered a protocol with better survival rate than the protocol offered by Children's. Plus, all of their equipment is used only on children there. I had less than 72 hours to make arrangements for Scotty, pack up baby Jake, Kevin and myself and head to Memphis - through a ice storm of course. Thank Heaven, my parents made the drive with us at the last minute.

St. Jude was the right place for Kevin and what an amazing place. The doctors and staff are great, but what I think really makes St. Jude amazing is all of the contributors who support St. Jude. I think it is awe-provoking that a hospital can run on donations, with the average donation being $23. Yet, their daily cost of operating the place is over a million a day. Those who do have insurance, they do ask the insurance company still to pay for treatment and some do and some don't. We didn't have the issue with bills like we had at Children's Hospital. I think the story of Danny Thomas is so inspiring. The whole thing says alot about the society that we live in. I feel we too often sell each other short. We are all capable of great, amazing things. We do it everyday, for some people it is because a commercial brings us to tears and they open their checkbooks and give $23.

So much has changed over the last year, and how much this year has changed me as a person. I have experienced young children suffering horrible deaths, I have lost a couple of my neighbors to cancer too. The first day after arriving in Memphis my step mom's dad passed away from a freak accident golfing non the less! I look at life so differently now. I have trouble taken things for granted and find too often I speak my mind, which is hopefully something I will get back under control but something I needed to help get Kevin the best care I could.

Last night my friend and neighbor Bonnie called. Last year, when everything was going on she stepped up and told me not to worry about Scotty she would take care of him while I was gone with Kevin and Jake. Scottys life got turned upside down last year too. He became a frequent flyer and knows just want to do to through security. He has lived along the Mississippi River for a month in the summer and almost every weekend. Baby Jake will probably not remember living at the Ronald McDonald House in Memphis, nor the apartment we eventually rented in the south part of town. He probably will not remember the long days, weeks and months at the hospital. He probably will not remember the nurses who held him while I comforted his big brother. He probably will not remember Kevin throwing up after radiation each day nor his screams each time he had to be poked. He probably will not remember each night that his mom had to prepare Kevin's TPN and pretend to be a nurse as she flushed his big brothers lines and hooked up the bag of nutrition while some new relative or friend of the week that came to help during chemo try to put him to sleep. But I can see already that Jake manifests the love that surrounded us during this time. He is the first to greet anyone at the door with a hi and a big toothy smile. He is the first to get a look of concern and give a hug when he sees someone sad. He gives hugs frequently and love often.

A year ago I had no clue what was going to be expected of me and I am sure Mike and Eric feel the same. A year ago I didn't know what Kevin was going to have to try to live through. But we didn't have to face it alone and I appreciate that.

So last night Bonnie calls me crying. She tells me she was at last nights dress rehearsal for the school Talent Show. She saw Kevin get up there on stage and spouting off a bunch of silly kid jokes with a bunch of fuzzy hair sprouting on top of his head. She was crying because she was happy he is doing so well. It is a miracle he is able to walk up there himself, remember the jokes and walk off. It is amazing he is here with us today. I think it is because of the great team that assembled around Kevin. It is the friends, old and new, who prayed for him. It is the friends of friends, the friends and family that sent cards and care packages. It is the amazing hospital staff. It is a school community that rushed in at a moments noticed. It is the moms who helped Scotty get to and from preschool for me. It is the family members who flew out to Memphis to help. It is the friends who used their vacation time to come out and help. It is all the people who attended fundraisers so our family could have a safe place to stay in Memphis and be together, and not lose our home. Even though it was harder than I ever understood cancer treatment to be, this all is still a very profound experience that will take years for me to digest.


If Kevin had gotten this 25 years ago we probably would have lost him by now. Since there is little to no survivors of medulloblastoma from more than 20 years ago we don't have a clear idea of what the future holds for Kevin. But he is a shinning example that prayers do get heard (and do sometimes go our way), that love from family and friends can heal .

So tonight, on the eve of this anniversary, Kevin with his friends and classmates, is back to being the sometimes awkward but kind and slightly mature for his age boy that he is; he will be up on the stage surrounded by part of the community that lifted him up and hopefully making them laugh.

And most importantly not thinking a thing about cancer, but just getting through his lines.

Thank you for blessing our lives.
Love,
Rachel

3 comments:

colleen said...

What a wonderful journal entry. I have never written before, I don't know why. I have read your blog since August. My daughter Ellie was at St. Jude at the same time as Kevin and she was on the same protocol. Dr. Gajjar is Ellie's doctor. Ellie did not have medulloblastoma but the sister tumor, Supratentorial Primitive Neuroectodermal Tumor. (s-PNET). It is quite rare and a bit more agressive then medullo. Any way - I followed your blog when we first started chemo. Kevin was 3 rounds ahead of us so I used your blog as a guide to see what we could expect with each round.

Like Kevin, Ellie did very well on chemo. She had not one fever or infection and although the chemo made her sick, she got over it quickly. She ate while having chemo and we were able to dodge the TPN bullet. We knew how serious infections could be and we saw 2 other patients on this protocol not feel well enough to finish the treatment to the end. We know how things could have been so we were so very thankful to get through treatment like she did.

Ellie completed treatment the end of November. We have been home since 12.12. Home is so wondeful and so underated. :) Ellie feels wonderful and is back to school full time. She has had no side effects and has really done well. We did have residual tumor going into treatment that was not operable but radiation and chemo have made it so small that Dr. Gajjar cannot tell if it is scar tissue or live tumor. We go back for our 3 month check up in March and she will have a PET scan to check to see if there are live cells present.

Thank you and Eric for wonderful updates and we are so happy for Kevin. Thank you for secretly getting us through Chemo. I don't know why I didn't chime in sooner but please know Kevin has been in our prayers.

All the best and keep living in the moment!

God Bless - Colleen & Ellie Bouchard
www.caringbridge.org/visit/ellie1

Kathy said...

Right on. You go, mom.

Say hi to Kevin for us.

Tae Scott-Smith said...

Rachel,

You and your family have been such a tremendous source of inspiration--and information. We have found bits and pieces of research and articles on treatment and the type of cancer, but the real nitty-gritty of what could be expected or possible on down the road for Ethan and the best compilation of research is on Kevin's site. The most wonderful thing you all have given us is your friendship and support as we go through this rare journey the best way we can...together.

I was so happy to meet you, Rachel, that day at Target House and to find that we had not only had a similar journey with our sons, but also a similar approach to life and family. We tried a few times to meet up and talk some more, but things (I don't remember just what) or appointments kept that from happening.

When Kevin was admitted for his first chemo round a day or so later, I felt compelled to go to you guys and reassure you that it's typically scariest the first day of the round. You and Eric were so courteous and calm, even while Kevin was in the midst of feeling quite ill from the medicines. I felt like such a heel for getting in the way, but couldn't leave until you had some idea that it would be okay and you had so many people pulling for Kevin. Nothing prepares you for the first time your child has to be infused with those necessary (for now; hopefully not forever) poisons.

It's been so wonderful to keep up with you all throughout your stay in Memphis and your return home. I know how much of a source of support it must bring to others who are newly diagnosed and are looking to see what they might expect down the road. Thank you for letting us all see through your eyes. Thank you for being so supportive to our family, still, even though our actual time together was really quite brief.

We will continue to keep you all in our prayers and stay in touch through your site. I am interested in taking the cause to Washington this summer and, if I can manage it, would love to help out in whatever fashion you need. Let me know what I can do to help. I'd love to do anything I can to get people to recognize the St. Jude logo, the gold ribbon push and the necessity of getting help put into high gear. New drugs, more research and more awareness for parents who never really expect that cancer could touch their little ones. Just name it.

Much love to you all,
Tae, Will and the boys

P.S. I read your lovely post on Ethan's site and was so touched by your generosity. I don't think we'll be out of our home for much longer, so we're going to stick it out. The South just isn't as used to dealing with heavy amounts of ice and snow as the Northern neighbors, so I imagine that that has something to do with the delay in repairing the power lines. Oh, well, there are far worse things in life to experience. :) Thank you for the offer of a cozy place to stay, nonetheless.